Patient-Initiated Follow-Up (PIFU) as reorganized support for increased patient involvement – focus group discussions among patients’ with inflammatory arthritis

BACKGROUND: Inflammatory Arthritis is characterized by lifelong medical treatment and an unpredictable trajectory because of the fluctuating nature of the diseases. Proactive disease management is recommended, which includes close monitoring of disease activity that traditionally has been ensured by outpatient visits to rheumatologists at various fixed intervals. Internationally, there is a growing interest in how healthcare systems can be more flexible, individual-oriented and increasingly involve patients with lifelong diseases in their own treatment and care. We aimed to explore how patients with Inflammatory Arthritis with low disease activity or remission (DAS-CRP < 2.9) experience patient involvement in a reorganized follow-up care based on flexibility and patient-initiated contact. METHODS: We conducted a qualitative study based on four mixed group discussions focused on patients with inflammatory arthritis (rheumatoid arthritis [n = 21], axial spondyloarthritis [n = 3] and psoriatic arthritis [n = 1]) participating in a reorganized follow-up care. Changes in follow-up included access to a nurse and patient-initiated follow-up (PIFU). The analysis was based on content analysis. The reporting adheres to the Consolidated Criteria for Reporting Qualitative Research (COREQ). RESULTS: In total, 25 patients (20 females (80%), mean age 61.8 [range 28–79]) participated. We identified three categories. 1) Patient-Initiated Follow-Up do not affect patients’ perceived support in disease control; this refers to patients’ experience of more time available through better resource utilization, as well as trust that access to professional support would be available whenever needed. The category 2) Information is valued by patients to delineate responsibilities in a new patient role reflects patients’ uncertainty in the transition to PIFU, combined with confusion about the distribution of responsibilities. 3) Patients need both extended perspectives of their arthritis and focused dialogue is about expanding patients’ understanding of their arthritis by interaction over time with both a rheumatologist and a rheumatology nurse in a focused dialogue to involve the patient. CONCLUSIONS: Patients participating in PIFU welcome the flexibility and involvement. However, patients need relevant information to act adequately within a new patient role. Interaction with both rheumatologists and nurses, combined with sufficient time for dialogue, broaden patients’ perspective, make opportunities for action visible, and contribute to patients’ ability to participate in follow-up care.